Michael · Rossman

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Phase II – Days ~75-112 – A Touch of GVHD

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But then, there was the matter of my counts ….

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I’d been getting comprehensive blood-cell-counts since well before hospital, of course. Once in, metabolite counts were added and the frequency multiplied as they tracked me through chemo and the subsequent plummeting of my cell counts, and the zig-zagging of my hematocrit (red-cell equivalent) and platelets as they pumped me with transfusions that disintegrated too quickly until the un-transfusable white cells had nearly bottomed out … whereupon, my new neutrophils began to kick in, and then the platelets and red-cells fell less slowly, started to steady as production resumed … o, that was so nice to see.

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And all along, I’d been making my neat not-so-little graphs in four colors of pen, tracing the declines, the zigs and zags, the hoverings. And drawing more than a little irritation from my hematologist, because I persisted in wondering why one transfusion of two units of reds only raised my hematocrit by three points whereas the previous two such had averaged five apiece; and so on – leading him to remind me, with increasing sharpness, that there was much more variability in such matters than anyone with no clinical experience might assume, plus a lot that just wasn’t understood. Not to mention that he had so many patients to cover that an innocent gesture towards a red line’s wiggle was like screeching chalk.

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Granted, every point. And moreover, the unacknowledged error-ranges in their so-neat decimals on paper were quite large. So I just shut up, though underneath I knew for sure that even given all this, the colorful curves that kept zigging and snaking down my graph-paper spoke biological sense more vividly even than the accumulating numbers. By the time I left hospital, my neutrophil count had boomed past high normal to 7,000, courtesy of a pricey Neulasta shot, and then fell and steadied at half that, just fine for a real person. My abysmal platelets (or Devora’s) ramped up production steadily, peaking over 180,000 by early January – half what I used to pack when my cuts closed instantly, but better than lots of folks on the street. And the red cells were coming on line – my hematocrit was staying roughly stable, which meant that already as many were being produced as were routinely disintegrating – I was coasting at Hct 34.5, well above the Hct 27 with which I managed to climb Majuba Mountain in Nevada and lug down great chunks of malachite breccia two months before hospital, that I felt more than robust enough to romp in Wildcat Canyon, and looked forward eagerly to the red line’s gradual climb to the Hct 45 or so of normal oxygenation.

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Only it didn’t climb. It just wiggled around between 32 and 34, and then 31 and 33, 32 and 30, on through January. “How come it’s not rising?” I asked every now and then. Oh, the reds are slower than any but the lymphocytes to really get to multiplying, they told me. “And the platelets, they’re down to 120k?” Oh, the platelets jump around a lot, they said, which I did know already; so I watched benignly as they bounced around to the high 90s, the low 80s, kept gracefully declining. They sure do have a lot of clinical experience to judge by, I had come to trust them on that score and still do. But transparency is another matter; and let’s face it, what physician is eager to share all his possible surmises, even with a patient as smart, open, relatively-balanced, information-hungry and genuinely appreciated as I know Jeff sees me?

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Meanwhile, I went back to walking after my legs healed up, a bit more circumspectly, and played more flute when Carla came back in town, connected with Anne, saw loved ones some more and romped with the dog – though I put off most invitations for walks because I was still cranking away on the website, just hitting my stride. It was rather like old times, wrapped in the flow of work, tedious in its detail but so satisfying as bulk gathered to coherence, breaking for tea regularly but sometimes forgetting to eat, and then more often, until I realized that I’d eaten hardly more than two day’s food in the past four days, and that Karen had been righter than I’d realized in enticing me to more. And I tried to make amends, and realized that it wasn’t just normal work-distraction, but that my always-so-robust appetite had flagged. And that I really didn’t feel so much like working at the screen that afternoon, let alone calling Ricki back to take the walk she offered, or going off with Anne. And the fascinating primary season was already in progress, and me with a cable TV for the first time getting to watch Oberman on MSNBC, and Hannity on Fox – what fun! – so there was plenty of reason to lounge on my waterbed with Karen and sip smoothies till 2 a.m. And all the next day. And for two days more I lay there, so afflicted by lassitude I could barely stir myself to go pee or to squeeze out the yard-long “soft ice-cream” coils from the magnesium-supplement-softened feces in my rectum. And without appetite, utterly, for the first time in my life. It was quietly astounding, like going suddenly deaf. Not to mention the stiff distension and pain gathering at my liver’s margin and spreading across the abdomen.

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By then, I had a pretty good idea of what was happening, from my reading, and called to tell them so; and they called me hastily into clinic midweek rather than wait till Friday, to take my counts again and confirm: yes indeedy, assuming we can rule out stool infection (take sample) and this and that else, well, you’ve got a touch of intestinal GVHD. Which we’ve really been waiting and hoping for, because it means Devora’s T-cells are probably active not only against my gut but against whatever remnants of malignant clone may have survived in my marrow after those 21 rounds of chemo. So it’s really a good thing.

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Okay, I agreed; and felt moreover: this is a breeze, compared to the variety of gruesome GVHD experiences I’ve been reading about on the BMT and GVHD list-serves where I've been lurking daily, fishing out snippets of useful advice about such various matters – more practical, I imagine, than many clinicians can offer – in case one or another does come along.

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So Jeff sent me home with a script for Prednisone, 20 mg/dy. Though I squirmed at the thought of oral steroids that eventually turn bones to mush, this was short-term, and I sure did want to eat something. By the third day my appetite was nearly back, the liver-pain nearly gone, and I was back working on the website. A week later, he said that the GVHD seemed under control, so I could taper the preds off over three days. Instead I took a week to do so, in paranoid prudence. And started walking again, a bit tentatively now, and went home with the HEPA mask to work on a display of posters for the Berkeley library, inspired by my friend Arnie Passman’s fervent organizing of a celebration of the fiftieth anniversary of our beloved Aldermaston peace-symbol. Drove by myself for distances for the first time: into Oakland to scout posters; to Montclair to lunch with Jonathan Fernandez, the marvelous activist-archive; over to Olema to hang out with my son Lorca in his own ambiance, instead of the tight tension of the critical clinic visits he always companions me in. Ah, how so fine.

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Though eat as I would, my weight stayed down around 137, six pounds under the 143 I’d so happily emerged from hospital with after melting away the 14 pounds of dangerous fat I’d been carrying around my middle for too many years (minus a few pounds of lost muscle-tissue from my inactivity.) And my platelet counts and hematocrit kept gracefully declining. And my appetite flagged, and with it my will to work, and as I watched the pundits parse the latest primary rounds my abdomen grew tender and then painful again.

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So it was whisk! over to clinic again for a midweek visit, instead of the normal Friday round-trip that averages five hours to get my blood drawn and a twenty-minute consult when I’m lucky. Karen’s been so patient, so constant and deft in her chauffeuring me through the early-morning commutes, so content at feeling new neurons grow as she graduates from the Monday Times crossword to the Tuesday and ventures beyond, in between watching to see that I’ve told them all I’m likely to pass by, and asked them all that matters. This time it took longer, they did my fourth bone-marrow biopsy since the transplant, to see what was going on inside. It may seem a tad barbaric to go in with that big needle through the iliac crest to secure a core. But in the scale of life’s indignities, that’s not such a big deal, and I was delighted to learn that NP Cheryl Breed, the only one I’ve found there who knows much about GVHD, had also the relatively-gentlest touch of the four who’ve violated me that way, and push of Demerol was just enough so that I hardly quivered while joking with her throughout, yet wasn't groggy for hours thereafter. And she got bone-spicules out for the first time! Rather than only a red fountain as before, which sure beat a dry well the previous time. And sent them off to stew in a lab for weeks, to get the first cytogenetic report since the one before hospitalization that told us all how fucked-up my malignant clone was and why full-intensity chemo was for sure the way to go.

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So Jeff seemed relieved at this definitive diagnostic – slack off the preds, the GVHD comes back – and seemed relieved also to be able to explain that he thought it was probably the GVHD coming on since January that had inhibited my red-cell rise and caused the persisting, accelerating decline in my red and platelet counts. Okay, it’s nice to know that something’s responsible for that, I thought. Until Karen asked me naively and pointedly why Devora’s T-lymphocytes would be active against her own developing erythrorocytes and megakaryocytes. I couldn’t really think of a biological rationale to reassure her, but was (over-)ready to concede that they knew more than I might imagine.

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So after transfusing me with two units of reds for the first time since hospital, they sent me home with another prednisone script, 60 mg/dy this time, let’s hope this also reverses the decline in my counts. I winced, asked for a bone-density scan to establish a baseline before further deterioration, and doubled up on the 500 mg calcium citrate tabs, belatedly adding 1000 units/dy vitamin D for better absorption. Sure enough, the preds knocked the GVHD symptoms right down again. I was eating ravenously as Obama was clobbering Clinton in a string of primaries. As Jaime had requested, I sent round his earnest wise letter in support of Obama; and found myself reading Becky O’Mally’s editorial for Obama in the Daily Planet with easy pleasure until the third column, where she quoted his letter entire, bringing me to grateful tears. How finely he’s doing up there in Olympia, after earning his spurs at Go, gone back to school in public administration with a policy focus, pumping out papers worth every compliment they receive, organizing an Obama precinct team, supervising polling, his first real launch into the world he made himself for. And how fine and fitting for his energy to resonate here in his hometown.

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And me, I was getting back on the hustings too, in my way. I’d already dared to attend a modestly-crowded “seven artists screen-print their posters live” event at a small gallery in S.F. highlighting a memorable dense political poster exhibit that was touring, to gather work for the archive and network vigorously despite my mask. And on Feb 20 I ventured downtown to the celebration Arnie Passman organized for the peace symbol anniversary. Gosh, it was mellow and warm – there were hardly any kids among the fifty or so over-fifties there, but what fine company it was, as we took turns reading and singing. Hali and Randy played, Wavy Gravey read from his book – how odd, to hear it now as as modest traditional culture, rather than joyously outrageous! And a dozen more, and Arnie’s fine history of the symbol, and even time for me, though I wasn’t on the program. I read the two Lao-Tzu translations about war that you’ll find on my website; and read “War Games” (there too) for the first time aloud – it’s a quietly killer piece, despite being also an unselfconscious portrait of the poster archivist a few months before he became one consciously; and I could hardly get through the tears at the end, that remain as fresh as those I spilled while writing that ending three decades ago.

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But what pleased me most, I do confess, was what came to mind to keep Arnie from introducing me to those who didn’t know me by sight. I suppose my name travels more than I know, but I’ve been so comparatively a recluse for thirty years, coming out in cultural public so seldom save at decennial FSM festivities, that I can’t recognize even a tenth of the players in my own cohort, let alone among younger folks. So I stepped up to the mike, pulled down my mask, cocked the cap back on my still-baldish head, and said simply, “Hello. I’m Michael Rossman, back from the dead. At least temporarily. As we all are, right?” – before explaining about the poster exhibit, and sharing the soft knives of Lao-Tzu and my own heart.

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Ah, poetry on the hoof! I wish I could be that concise and punchy once every five years or so. It made up for the sleeplessness that night and next, for the prednisone tends to wire one with strange energy, and it took awhile for me to learn to nibble enough Ativan to sleep through the night. Still, even that wiring was useful, as I plugged on for a day and a half, with only a few hours’ nap, to digitize the entire text of Winds of the People, my dramatic documentary of the Spanish Civil War, and fully expand the anthology of translations that provide its body, and put them all up neatly on my website, with even a rudimentary jpeg of the book’s cover, and all the individual poem-links working. Look, I’m learning, I can do these simple neat things!

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But this strength doesn’t compensate for the meds fight. God, I can hardly bear to mention it. After getting my first round of outpatient meds from the local pharmacy, I went thriftily to order them through HealthNet’s mailorder pharmacy ExpressScripts, and found myself plunged into a living, debilitating hell. To make it brief, focusing on the main pivot: I have in hand HealthNet’s statement of Benefits Received for 2007, which says I was sent a three-month’s supply of Vfend (~$13,500 street value) on December 31, which of course would carry me till April Fool’s Day, and on their nickel to boot, with only a 5% copay. But ExpressScripts never sent it, because HealthNet never approved it, at first because it had slipped down the cracks during a system-management software change, and then because they decided it was too early to reorder after ordering it in December or on January 8 or whenever, even though no order was actually carried through.

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Since Jan 3, I have been on the phone no fewer than 25 times with HealthNet, for an average of two-and-a-half hours each time – not to mention nearly as many with ExpressScripts nearly as long, half as many shorter to Elephant, and driving my hematologist’s chief nurse (who spends 70% of her time dealing with such fuckups for 100 patients) particularly nuts – each time speaking with a different person, patiently explaining the whole endlessly-concatenating chain of fuckups and apparent resolutions betrayed by further arbitrary fuckups and so on … each time a different person, persisting through them to a different supervisor who still can’t quite get it … and so getting last-minute authorization for four emergency refills at Elephant so far, this last one due to run out this Friday, with me back at square one as to what to do next, and four grand out-of-pocket so far for the Vfends they should have sent me in December, on top of five for last year’s “doughnut hole.” And I have been so calm, so kindly, so patient every time, that Karen who has overheard so much of this is quite amazed, as she or anyone more normal would have blown it by the third or fourth time. And it took me till mid-February really to grasp what a strain, what a drain, this has been upon my system – how unhealthy, in a word. Literally, it’s been a quarter-time job for the past two months, even to get them to approve the emergency refills; I don’t know who else can handle it as it lies. I know there must be some way to get more leverage in the situation, I’ve been told that my friend Lucy may be able to help; I haven’t been able yet even to summon the energy to call her and explain and ask, it’s been soooo draining and demoralizing. And I’m strong and smart and well-informed and persistent, and I wonder how the average suppliant can bear it.

The Recovering Rockhound Dreams Remission.He dreams of crystals as big as his chest,a super-mall of captive light workinga rare and lightening magic: amethystsas large as bottled ships, slabs of serpentineflaking into scales as big as floor tiles,aquamarine seas of watery mirrors and rainbowcavalcades of tourmaline headdresses..What would it take to enter there, to buyall the stock in hand? What would I do with all the hematiteI could carry but could not lift? Where would I put these sterileglobes of rose quartz, these ancient spears of fission ash?.All around him is a light-show, kaleidoscope of funperspective, minute facets of knowing, experimentsin receptivity, dual points of view for the asking, hardproducts of the quest, the desert's canyon horde.Every probe, an opening. Every opening, a drippingstalactite mound. Where would I put the feetto hold this massive rock, these jagged ridgesin the clusters' sway? Serious enough to crusha man. More precious than money's worth, a manwho sparks when the lights go out, who refusesto go - that one vein yet uncovered, that extendsinto the family of man, a geodesic harmonyof connections, fugue into living. At dusk.the exploration begins, a dusting, a delicateoperation that could last a lifetimesave one.

Dear Michael,You will be heartened that we Obamacans have rallied in the search for a warless world.

I am heartened that your own habitat may again soon welcome you back within it... though there can be no doubt it will incrementally return to loving jungle. Whoever gets that philodendron deserves a sizable research grant... just for moving it.

Your news about various doings with that poster collection are also encouraging.